new with question

[zfairy]

I 'm new to this i.c and they(doctors)still can't get along to make a decion as to weither or not i have it. i've seen several doctors, and all but one can agree that i have it. i also have IBS, ENDO,FIBERMYALGIA,SJORGEN'S SYNDROME,ECT.. On top of it my bladder is floating , why no one can tell me why or what is going on. my Pain is constint and i cant seem to get any comfort.im on several meds for ic and went through some percedures so , why cant i have a dignosis , all i get is more stupid pills and looked at like im crazy and making it all up. how can i get relief???????

[Katrina]

:welcome: to the ICN!
I had/have endo and have IBS too....are your doctors doing anything to treat the pain?
What are your symptoms?
What meds are you on and have tried?
What kind of IBS do you have?

Don't worry...this is just the beginning, things will get better. You are not alone.
Are you on the diet?

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=27584 newbie kit moved to newbie board from the oldies to the newbies

http://www.ic-network.com/forum/showthread.php?t=25908 alternative start thread
http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.

[ICNDonna]

Are you seeing a urologist?

Donna

[meggerz]

I had to go to a pain managment doctor for my pain meds. My pain was constant also. It got a bit better following the diet however there was not a day or minute that I did not feel my urethra and bladder. I am much better now, still taking the elmiron and elavil also hydrocodon for breakthrough pain. I had to see a pain doctor for my pain. Just look in the phone book for pain managment clinic. Call and see if they treat or are willing to treat IC.
I hope you feel better.
Megan

[zfairy]

Katrina, thanks for the words of encouagement, here are the answers to your questions.

1. the doctors are giving me pain meds, but the reason i agreed to do the surgry so i can get off the meds i had meds they make me feel or at least i think they change but really they just dont always work and i need 1 strong one for days like now!

2.my symptoms are burning,stinging,feels like someon is stomping between my legs and r ripping my legs apart.I've been having incontence problems to where i have to wear depends, this after the hydoditntion.I pee about 30-50 times a day if not more, and at night 4-6 times . i wake up tried and restless and feel as though i did not sleep. i feel the pain in my hips as well as in my tummy.

The other things i have are
..syncope...PTSD..depression...T12 PAIN... Endometriosis...gastitis....chronic vomiting...severe headaches...acute greif reaction.....sensitive stomach....IBS with constitpation-blood in stool...claustrophobic....bipolar.....back pain -discogenic-NOS-......Degenerative,superior anterior endplateof T-12.....Leukopenia...disc bulging.....spinal canal or neural foraminal impengment.......possible I.C...Suspicious for golmeruli.....ANA ELEVATED....Complement c3 low......Sjogren's ANTI SS-A....... DIPLACED BLADDER TO THE RIGHT.

3. MEDS IM ON....
1.lycria,vicodon,valium,ibprofin,compizine(nausea med) klonipin,elimiron,previcad,calcium citrate,voltrex,percocet

4. i have rectal erythema.IBS

[zfairy]

Are you seeing a urologist?

Donna



:hi:

yes he does not want to do anything do to the fact that he says that the surgon messed up and that there was a large fight between my doctors. the gyn and reg. M.D say i have it and he kinda looked at the report and said i was fine go see a higher up specialist in San Francisco.

love and hope, kara

[icjen]

Sounds like you might need a second opinon in the Uro department. You do have alot of other illness that are common among ICers, and symptoms that suggest IC. What surgery/tests did you have done? What did they find?

[ICNDonna]

I have to agree. If I were you, I'd go for that second opinion.

Donna

[Katrina]

I am so sorry you are going through so much...and I so hate the stress that comes with doctors sometimes :grouphug::grouphug::grouphug:

IBS with constitpation-blood in stool are you sure it is IBS....IBS does not normally cause bleeding.
ibprofin is acidic and not IC friendly...you may want to try a different medication.....both aspiren, Ibuprofen and decongestants are not IC freindly. IF you do need to take them anyway you may want to take them with something like Preleif.

I don't recal you answering if you are on the IC diet? It is the best treatment we have and if it helps that is sign you do have IC....with the disagreements with your doctors you may want to try it just to find out if it helps...you can find it in the handbook.
:grouphug:

[zfairy]

Yes, i'm on an I.C diet. and i finally got in at Stanford U ICA medical center to see D.R Paine. so that is next month. i hope i find out more.

[Susan Osborne]

I 'm new to this i.c and they(doctors)still can't get along to make a decion as to weither or not i have it. i've seen several doctors, and all but one can agree that i have it. i also have IBS, ENDO,FIBERMYALGIA,SJORGEN'S SYNDROME,ECT.. On top of it my bladder is floating , why no one can tell me why or what is going on. my Pain is constint and i cant seem to get any comfort.im on several meds for ic and went through some percedures so , why cant i have a dignosis , all i get is more stupid pills and looked at like im crazy and making it all up. how can i get relief???????
sorry for all that u are going through. i know what it feels like to go pee that much. hard to even do anything. would like to know what the 2nd opinion doc says. could u tell me what a floating bladder is and what they are doing about it?

[zfairy]

I still am unsure at this time what that means. My DOCTORS ARE baffled as well, so i go to Stanford U ICA MEDICAL CENTER. All i know is that theyput me on bed rest and that it has been since feb. I FINALLY STARTED ASKING FOR ANOTHER OPINON AND THEY NOW A WILLING TO LT ME GET NON PAIN PILLS. I HATE PILLS AND ONLY TAKE THEM IF I HAVE TO.